What M.E?

by John Darvall

In the last few weeks I have seen the best and the worst of what we are capable of. The worst was on a beach in Tunisia and those who died at the trigger of an Islamic Extremist gunman. This is only the beginning of this story from the country that seeded the Arab Spring. Tunisia and Europe will struggle to come to terms with the consequences of summer of 2015 and the biggest problems may have already begun. Any country that relies on tourists spending money for a significant part of its GPD is going to hurt as this cash tap is turned off. The financial pain that Tunisia will feel will be very easily harnessed by those who have no desire to encourage the West back with their flabby white bodies to its turquoise seas and sandy beaches. Maybe this is part of the terrorist plan? As ever social media will have its dark, digital hand in all this.

Yet something else has kept my hope alive and well.

Two weeks ago I went to see a 38 year old woman called Naomi at her home to interview her for my BBC radio programme. I don’t like doing what are known as a ‘pre-rec’ after a three hour live programme. I always feel ‘flat’ and feel I lack the ‘spark’ a live show and red ‘ON Air’ light gives me. After this interview I will never be so pathetic again.

Naomi has lived with M E, Myalgic Encephalopathy, for 25 years of her life. She went from being a bright, vibrant young girl to seriously ill in a matter of weeks. Now Naomi is barley able to get up from her bed for 20 minutes a day because of a virus and how her body reacted to it. When I knocked on the door to interview Naomi I knew little about M E. other than its dodgy reputation and the questions about whether it was actually a real illness. When I left Naomi’s parents home where she lives, having spoken to her, her mother and brother for an hour I cried.

I played the recorded interview out on my radio programme, put the video of Naomi’s story up on social media, lovingly made by her brother Tom, and thought that was it. I was wrong.

I am not a big fan of social media. It seems to be little more than a platform of inanity and fantasy. At it’s worst it is a vehicle of anger, hatred and allows those who delight at taking offense at anything to hide behind their made up names and say hurtful, stupid and ill-informed things without real consequence or responsibility. This is not to be confused with free speech. Free speech is saying what you feel or believe and having the courage to be seen standing up to say it. At its very worst social media is full of narcissists and the delusional with a worrying need ‘followers’ or ‘friends’, a mob of cowardly, unidentifiable cockwombles hiding, carping and hating.

Social media can also be a huge force for good; a force for change and it can give voice to those who don’t have one. Naomi’s story on the radio and Naomi’s video story has revealed thousands like her who are suffering, thanks to social media.

I never knew how big a problem M E is. It is only through Naomi’s courage in giving what little energy she had in telling her story and allowing me to share her story that others now have a voice too. Thanks to Naomi others can get help and have hope. This includes my own stepsister who I never knew has M E until this week.

I will now do more to help others with this condition. M E is dreadful, debilitating illness that when it takes hold it never lets go. For Naomi, for all those living with chronic pain and M E, I will do more while I can. I will also use social media too because I can finally see what it can do rather than what it seems all too capable of doing now.

62 Comments to “What M.E?”

Thank you so much for your open recognition of M.E, taking the timeout to work towards understanding and recognising how debilitating the condition is.

For those of us within the M.E community finding allies is imperatively important. Most are seen as and labelled hypochondriacs by the medical profession, within our peer groups and sadly for many our family members.

Thank you for having the eyes to see the reality. I have been so touched both by the thoughtfulness of your interviews and your writing of this blog. Raising awareness is critical and “Thank you” barely touches it.

I (perhaps like your stepsister?) had avoided telling even people close to me what was going on due to shame and terror of being dismissed as a malingerer. Earlier this year, I decided to “come out” publicly when I launched a crowdfunder on Facebook. Within a week, three strangers contacted me with thanks, saying that my courage in sharing my story had convinced them to pursue their own diagnosis.

You will likely never know how many lives you may have transformed through this show. My father commented: “the programme was exemplary” and a busy schoolteacher friend told me it was: “very gripping and informative. It’s a long time since I’ve just sat and listened to the radio because it demanded my full attention.”

Every discussion about M.E. could benefit from stating that M.E stands for Myalgic Encephalomyelitis, which means “Painful inflammation of the brain & spinal cord”.
It is much harder to ignore or ridicule the illness when you known that, don’t you think?

John, thank you for raising awareness for an invisible yet life changing illness, I’ve had ME for 18 years now since I was 24. It has taken away many choices for me including being able to work, have children and carry out even the most simplest of tasks. However it has taught me to appreciate life, how very precious it is and how easily it can be taken away.

Thank you John for all that you have done recently to highlight ME. I hope that your stepsister has found or will now find some help to better manage her way through what is a very misunderstood and woefully under-resourced disease. Also a special thank you – again – to Naomi and her family and all those who phoned in to your show. Together we can change things for the better.

The death rate for M.E. is roughly 3%. There are deaths due to cardiac failure, brain death, tumours, and liver failure. There are sudden deaths following exercise/overexertion, and deaths which occur after a long period of slowly worsening illness. Many of these deaths are due to overexertion caused by mistreatment and so could have been avoided, if patients had been given basic appropriate medical care. http://www.hfme.org/medeaths.htm

I would also like to say thank you! I have been sick with this now for 9 years and I too do not tell people about it much because they just look at you funny. Doctors too!! It really helps just to read about someone who believes and sees how horrible this illness can be. Thank you sir!

Thank you, John, for your thoughtful and moving piece, and to Naomi and her brother for what they’ve done to raise awareness about this awful disease. I’m very sorry to hear about your sister-in-law.

I’ve had ME for nearly 30 years and am currently housebound. For me, one of the most important things about awareness-raising is to let people know that there are some fantastic biomedical ME/CFS research charities that they can donate to.

Governments, including ours here in the UK, have spent peanuts on research and we patients and those who support us must do what we can to speed up research.

The good news is that the scientists are ready and raring to go as soon as they have the money!

Invest in ME are raising money for a UK trial of immune-system drug rituximab, which has shown tremendous promise in recent Norwegian research: their website is www[dot]ukrituximabtrial[dot]org.

For a list of other UK research charities (and some great overseas ones, some of which have Nobel prize winners on their teams), see the ‘Research Charities’ list in the ‘Resources’ section on www[dot]phoenixrising[dot]me.

ME is Myalgic Encephalomyelitis, not Myalgic Encephalopathy. Myalgic Encephalopathy is another made up term/diagnosis that is used to mean different things, usually CFS or the bogus “ME/CFS.” There are many fake ME groups that are using the name ME only. ME patients should not be supporting any “ME/CFS” charities or research.
Just telling stories and the “sympathy advocacy” may make patients feel good but, especially when critical issues are overlooked or even misrepresented, do very little to educate or inform.

And you’ve got me crying John. You are a very decent human being. We need, and welcome any help you can give. What you’ve done already is huge! Many thanks to Naomi and her family, and you.

And a correction of Barbara’s post. ME does kill. Some of the the severe, like Sophia Mirza and Alison Hunter, do die relatively young and soon. And some extremely sick like Lynn Gilderdale end up committing suicide. While not much research has been done in this area yet, a small 2006 study by Jason showed that about 20% of us die about 2o yrs early from ME-related cancer, and another 20% from ME-related heart problems. He is doing more research on this now.http://www.ncbi.nlm.nih.gov/pubmed/16844674

Hi John, I have been living with ME since 1988 I was 32 when it entered my body after getting a flu twice within a couple months part. I’m now 59. I just want to say to all of us that suffer from this disease, like it or not, we are part of a large family of survivors that know and share many of the symptoms that comes with it and that its comforting to know that even though we might not know each other, we share a bond together and therefore I’d like to ask of those who don’t mind doing so, to pray for each other every morning, afternoon and evening as if we were a close family. John, what ever help you can offer would be greatly appreciated by all of us.

There is an astounding ignorance among the effects of M.E., even among its sufferers … For example, it does kill people as the comment by leelaplay points out.

How Rarely? We don’t know!

There is a narrative from the media and from certain sectors of Psychiatry, that M.E. is either not “real”, or that it is not “that debilitating.” This narrative is immoral and false.

The consequence is that many M.E. sufferers feel social pressure and perhaps having a wrong view of their illness push themselves until they collapse. Family and friends may be unsympathetic because the media and the experts have told them that the illness is unserious. Maybe not very many time outright, but MANY many times through the tone in which M.E. is reported about…

Because of this there is only a very small pool of advocates for Myalgic Encephalomyelitis, and a correspondingly small pool of researchers. Off the top of my head MEresearchUK is one of the good ones, but while many research organizations measure funding in millions or tens of millions of dollars for M.E. it is usually thousands and tens of thousands.

As a result research happens too slowly to ever (as yet) reach a tipping point where a broad and diverse enough set of outside researchers get interested and progress begins to snowball as we have seen happen in many other disorders such as: HIV, Cancer, MS, etc.

We sufferers from M.E., need many things, since there is, no clear cut path to a cure ( due to the scant biomedical research ) but one thing that could help a lot is media coverage that is sympathetic and fair … as you have done… Too often it feels like the media haphazardly throws together articles on M.E. and uses as a cover photo some picture they got from a google search of “caught sleeping at work” :(… Sometimes it seems certain sectors of “expert science” (usually the softest of the soft sciences I might add) seem to revel in the chance that there is still, today, a group of people they can use their authority to abuse and torture a la O’brien or the grand inquisitor without repercussions.

Thank you for doing this. I have had this dreadful illness for 11 years now and I am now housebound. The absolute worse thing of all is to be this ill, to be this desperate so that death would be a blessing, to have no quality of life and yet not be believed by doctors or society at large. There is evidence it is a real illness and it has been found in postmortems too, yet we are the ‘whipping boys’ for a largely callous and ignorant medical profession who wish to dismiss it as mental ill health and an indifferent government who make us endure torture to get any kind of help or support.

Thank you for making this radio interview. As the mother of two teenagers with ME, in Norway, I really appreciate that somebody tells this story. My children have been ill since the age og 8 and 11. Stories like Naomi’s still start today with new children getting sick. Let’s hope there is a cure soon, so no more children have to be suffering for 25 years and miss out on their childhood and teenage years. http://www.fryvil.com

Thank you from me too. I have had this disease since I was about 9 or 10 circa 1970. That means I’ve struggled with it for 45 years and despite some of those years being easier than others each and every day since then has been marked by this disease. I have been mostly housebound & unable to go without the help of others (manly my husband.. and only then when well enough ) since 1994. I;m doing well if I can manage 2 hours on a Saturday afternoon. Life gets progressively worse with each year that passes and is now bound up in a storm of neuropathic pain.
I am so pleased that you took the time to speak with someone who actually has ME (we know from good research that possibly between 40 and 60% of the people diagnosed with it do not have it but have some other condition as yet not diagnosed by a lazy medical profession). I would very politely ask that you might read this document ( http://www.meactionuk.org.uk/Corporate_Collusion_2.htm ) which whilst written in 2007 (quite a lot of skulduggery has happened since then) will provide you with an overview of why people with this disease in the UK are treated so badly. It’s so incredibly refreshing to see a mainstream journalist really respond to the dire situation in which sufferers find themselves in this way. Most journalists writing about our illness are lazy and simply report what they are given via the Science Media Centre..and therein lies the Catch 22..as you will discover if you read the document I linked to. I’ll end simply by saying a big ‘thankyou’… the tipping point has pretty much arrived in the US …the UK position on our disease is untenable..if you can break the story of this scandal then ‘thankyou’ will be the very least of the superlatives you’ll deserve!

My daughter got ME/CFS when she was 15. She suffered through college and working for 3 years. Just last week she took her life at the age of 26.
This illness is real and I am glad to see that people are trying to make the medical community realize that something needs to be done. Kathy

I am so sorry to hear this Kathy. ME is such a cruel illness, stealing so much from people, but with so little public sympathy, and such meager hope on the horizon for treatments, or research. This should not be happening. xx

Thank you so much for seeing this illness as it is, a life- limiting destroyer of relationships and our very being. It disgusts me that anyone can call this illness psychological, who on earth would talk themselves into being this sick, and being laughed at with it. I have seen many doctors who have no clue what this illness is. It isn’t forgotten, it is purposely ignored. Why would a psychological illness prevent sufferers from giving blood? I’m yet to have this explained to me. I, personally, have lost my whole 20’s and more now. At 31, I hang on to my job by my fingernails. I am penalised by my company for being sick. I truly wish I could magic myself better and get on with having an actual life. This illness has made me suicidal more times that I can admit. I have been very close to taking my own life. My parents have been unable to leave me alone in the house, as they weren’t sure what they would come back to, and neither was I. I have fought every day for over 13 years, just to get up out of bed, just to manage to get downstairs. I have been bedbound, I have been wheelchair bound, and now, I can walk on most days, I can even manage to drive for 30mins on my own. That may be nothing for your standard 31 year old, but I have to see the progress in that, or I will give up. And giving up is one thing that this illness is lying in wait for, to take not just your life, but your heart and soul. So I will never give up, or give in. I will fight as best I can, day in, day out. I may not win every day, but I will make the most of what I have. Fighting against this illness is like defying gravity every moment you breathe. I pray for a cure, I would beg for one too. But, while we wait for endless research and answers, and who knows when the answer will be found, we fight each day to reclaim the lives we have lost, the friends who walked away, the employers who gave up on us, and now the government, who penalise us at every turn.

Never give up, raise your fists and fight. Reach for the skies, and don’t wait for the storm to pass, learn to dance in the rain. Xx

Thank You John
So much . . . .
I read somewhere that sufferers often resort to suicide with this illness.
And its no wonder.
We lose so much of our lives to it. All while the medical profession don’t want to know. And friends abandon us. Or at best don’t want to hear about it. Sit in silence while we try to reach out and explain how bad it is.
It really is grim at times.
Anne

This is one example of recent research (and there are thousands of examples of biomed ..not psyche… research to underscore the organic nature of this disease) which the UK press will not disseminate as it disproves their preferred notion that ME is a aberration of the mind:

Here is the abstract from the full paper, however the link provides a better layman’s perspective I think (Note the mention of the ‘A word’ which more and more specialists in this field are beginning to use … ie: the notion that this is another autoimmune disease to add to the list. Also please Google ‘Ian Lipkin’ .. I think you will find his pedigree far outshines the self aggrandizing head of the IOP at the Maudsley) :

Abstract
Myalgic encephalomyelitis/chronic fatigue syndrome is an unexplained debilitating disorder that is frequently associated with cognitive and motor dysfunction. We analyzed cerebrospinal fluid from 32 cases, 40 subjects with multiple sclerosis and 19 normal subjects frequency-matched for age and sex using a 51-plex cytokine assay. Group-specific differences were found for the majority of analytes with an increase in cases of CCL11 (eotaxin), a chemokine involved in eosinophil recruitment. Network analysis revealed an inverse relationship between interleukin 1 receptor antagonist and colony-stimulating factor 1, colony-stimulating factor 2 and interleukin 17F, without effects on interleukin 1α or interleukin 1β, suggesting a disturbance in interleukin 1 signaling. Our results indicate a markedly disturbed immune signature in the cerebrospinal fluid of cases that is consistent with immune activation in the central nervous system, and a shift toward an allergic or T helper type-2 pattern associated with autoimmunity.

Thanks for bringing Naomis story to a wider audience. People in the ME community desperately need help from journalists prepared to tell the reality of this story. The thing is – its also an incredibly intriguing story. How could such a big group of people be treated so poorly for so long? To really appreciate the depth of what has happened I recommend the film Voices from the Shadows:

It also features Naomi again plus two other serious cases. Its a great way of showing people the reality of the situation.

There is also good charities such as Invest In ME and ME Research UK. Beware of some of the others which do not really help at all and maintain the status quo. What is really needed is lots of research because there are clear biomedical signs of illness that have essentially been ignored for twenty years leaving people like me, Naomi and hundreds of thousands of people living very difficult lives…

Voices from the shadows in Febrary 2014 set up an evening talking about “Exercise and ME/CFS” at the Watershed – with Prof Mark VanNess, Dr Nigel Speight and Erinna Bowman following a screening of “Voices from the Shadows”. you can find thire presentations via ~ http://voicesfromtheshadowsfilm.co.uk/exercise-mecfs-event/

Dear John, I would like to add my thanks to everyone elses! Raising awareness for CFS/ME is vital as each year more fall ill with it and in recent years there are more and more children suffering with it.
In January 2012 I collapsed with CFS/ME and despite being in the healing profession I could not understand what was going on. Within a few weeks I was completely bedbound, in physical agony unable to feed myself etc….
I felt terrified, angry and confused. My good fortune was that I had studied psychology and homeopathy so with a lot of thinking it through and self medicating (homeopathy) I was able to slowly get my self going again.
When I was able to read once more (march 2013) I looked for answers but could not find any. By happenstance I came across a neuroscientific study that helped me make sense of this illness. Armed with this knowledge it took me 18months but I was able to regain full health.
I have written a book on this with the intention to bring hope to others that recovery is possible. I would be happy to send you a copy. In the book I outline the study I found to help others understand what this disease is (which is a neurologial disorder, a malfunctioning of the vagus nerve which coordinates much of what our Autonomic Nervous System is in charge of), and resourses from a holistic perspective of what sufferers may incorporate in to their lives on their journey of recovery.
If you or anyone out there is interested here is a link to a youtube introduction to my book Silent Pain. https://m.youtube.com/watch?v=DcEN_L-6eqc

I have had ME for 14yrs after getting a buyer’s virus whilst pregnant at 23. The virus resulted in my own body attacking my heart muscle and I developed heart failure at that time and was very lucky to pull through.
My body has continued to attack itself since that day and I was left with ME which as you’ve now witnessed is not just tiredness but a serious debilitating neurological autoimmune condition.
My life has never been the same and I have gone through hell but I am one off the lucky ones in that I can still function (albeit with struggle) and I “look fine on the outside”. When you look at Naomi there is no denying she is suffering a physical illness. We have all been neglected and left to suffer by the medical profession.
It was purple like naomi and the fear of progressing to severe ME without someone to help us that inspired a group of four of us with ME to want to stand up and be heard and raise awareness.
We wanted to use social media for positive use and try to emulate the success of ladt years ice bucket challenge for ALS. We decided to heat things up so to speak and because Flea from the red hot chilli peppers has ME (we thought this might help with celebrities endorsing it, it hasn’t ME isn’t a sexy or cool illness to have)…we came up with the Chilli ME Challenge where healthy participants take a bite of a hot chilli to show support for those suffering with ME. They film their funny reaction upload it nominate five others and donate.
Our only hope lies in research. We are so lucky to have amazing researchers on our side including top virus hunter Ian Lipkin who due to lack of government funding did the #chilliMEchallenge live to raise funds. And it worked and brought in over half a million dollars. But more than that it has given ME sufferers hope and united us and more and more ME sufferers are coming out of the closet so to speak to tell their story and raise awareness. 100% of the funds raised from the #chilliMEchallenge goes to either ME research at Columbia university or Invest in ME in the uk. In the uk there is a text line set up for invest in ME where you text CMEC73 to 70070 to donate £4. But of course people can donate to either online.
Please consider helping us make this the viral success the ice bucket challenge was. Consider doing a live #chilliMEchallenge on your show with whatever local celebs you can rope in and help us raise awareness for this awful illness.
Really hope you can help.
Kind regards,
Nicola

It is so great to have some positive media attention for ME, I’ve been suffering with it myself for around 9 years and i am so elated that it is finally being recognised for what it really is, a Biological illness!

Hi I have just read your article. I had been very ill for a while which my doctor said was in my mind. (some years later he committed suicide). So I saw a doctor privately who diagnosed me with ME in 1990. I changed my Doc and was so lucky to get someone who was more sympathetic to my illness. A year later I contracted salmonella which almost killed me and has left me with health problems today. I became allergic / intolerant to most food and medication and no one seemed to be able to help. So I took a nutritionist course to try to find my way around this problem. And with that and help from my pharmacist I was able to get through it. It was then discovered that I had fibromyalgia, which has similar symptoms to M.E.
However during my journey to better health I did some research on how food affected ME and Fibromyalgia sufferers and we discovered that gluten and egg had a dramatic affect on most of those people in my research.
My findings led me from being someone who was unable to climb my stairs to the person I am now – able to work and be in control of my health. Granted i still have to pace myself and watch what I eat but the research helped me and many others.
I am happy to share my findings and I can be contacted through my facebook .
But basically keep a food diary on a sheet of A4 and highlight it every time you are unwell, using a different color pen for each type of reaction i.e falling asleep, bad stomach etc. After 2 weeks you will see at a glance where things went wrong. then spend another week cutting out the foods you think may be the culprits, one at a time each week, starting with wheat / gluten, dairy, eggs and then other foods that seem likely.
Over the space of 4 – 6 weeks you should be able to pinpoint foods that are affecting you.
It is not easy changing habits of a lifetime. I love chocolate, but it gives me migraine, so I dont eat as much as i used to! I love eggs but they make me so ill I dont eat them at all now. You have to read all the packaging, looking for hidden ingredients (lentils are coated in gluten – it does not say that on the packet!)
It takes hours in the supermarket, but it becomes a way of life, a life with more energy and less illness.
I hope this helps some of you.
Tricia

Dear John, thanks so much for your interest and support. “Let’s Do It for ME!” is the inclusive patient-driven community campaign created in support of the proposal by Invest in ME Charity to establish a centre of excellence for translational biomedical research: the first of its kind in UK and Europe. Our initial fundraising target for the ‘Can Do’ IIME Biomedical Research Fund was £100k to fully fund the foundation study of the gut microbiome in ME research at Norwich Research Park. We are now raising the next £100k for future phases of that research. Our fundraising also enabled the B-cell research prerequisite to a UK clinical trial of rituximab to proceed without delay and we are working towards the £450k target for the IIME Rituximab Research Fund. So this is leading-edge research organised by patients/parents with the wonderful cooperation of world-class researchers in UK and abroad. We who run the campaign are long-term house/bed-bound, so we greatly appreciate any support and are truly inclusive of all ages and levels of illness severity from the most severe (immobile, tube-fed) to what we affectionately term our ‘willing wellies’ – fit and well friends & family. For anyone wishing to join in the fun for this very serious cause, we are sure to have something to suit you athttp://ldifme.org/
With grateful thanks and very best wishes, Team Let’s Do It for ME!

And, one of the saddest facts is that scientifically proven facts are out there and ignored. One of the best sites I’ve seen that follows up on each important discovery is at http://www.ncf-net.org. They not only are again proving the cause but seeking actual therapies. But, looking back at medical history, this has always been the case;

What a wonderful journalist you are to care about and write about this often ignored and forgotten population of patients with ME. We are the ones who are too sick to leave the house, too sick to get out of bed. So it is easy for the government and medical establishment and media to pretend we don’t exist. But we do. 17 million of us world wide. Personally, I have spent much of the past 25 yrs bedridden and homebound due to ME. I thank you for caring and writing about us. — Best, Rivka

John, your compassion is something the M.E. community is not used to seeing, so thank you for a wonderful blog and interview. It touched my heart. I have suffered for 21 years with M.E. and other illnesses. I was one of the lucky ones who received an early diagnosis through the famous Johns Hopkins Hospital in Baltimore, Maryland, USA. Their Rheumatology and Neurology Depts were excellent. Unfortunately, I’m on my 5th doctor here in England, as no one seems to know what to do with me. I find the medical field very different over here. Whenever a doctor states that M.E. is psychological, I want to counter with, “doctors thought M.S. and Lupus were, too!” Just because technology and research have not advanced to where they can pinpoint the cause of an illness, does not mean it can’t be physical in nature.

The Countess of Mar is a huge help to the M.E. community, so having you on our side will be a blessing, too. It gives us hope. Again, many thanks for focusing on this topic.

Also I run a Facebook group which is primarily for people that in live in Bristol and we arrange meet ups and discuss services in the Bristol area but anyone from the UK can join that has ME or Fibromyalgia or that are carers for people with these conditions. https://www.facebook.com/groups/1442606965964115/

Dr. Nigel Speight Paediatrician (retired) but still fighting to prevent children being taken away from parents by the ‘authorities’ and the parents accused of munchausens by proxy. Their children have ME.

These are just a few of the people, websites and a book that will give you all the information you need to really see the truth about ME. I warn you though, Sophia Mirza’s website and the book on amazon from Kay Gilderdale about her daughter Lynne and herself is heartbreaking to read.

I can give you much more if you require it and even put you in touch with these people and others.

I personally have had ME since 1998 and have like others suffered the ignorance, accusations, dismissal, incorrect medical care and now no medical care, the nightmare of the welfare system and the DWP and ATOS and soon the new Personal Independence Payment which is replacing Disability Benefit and instead of ATOS it will be Maximus, another fraudulent and theiving company from Canada. My full story is way too long to put here.

I hope you will continue doing all you can for as long as you are able. It likely won’t be easy and you may face deliberate prevention and barriers, smearing and various tactics that have been used against others who have tried to do something about this disgusting situation. This all may seem like a conspiracy theory or something out of the x-files at times. You may encounter lies from certain people, departments or their ilk accusing ME sufferers, advocates and supporters of being aggressive and even making death threats towards certain individuals but none of it is true and should not be listened to or taken seriously!

The main point is that ME is NOT CFS, ME/CFS, CFS/ME, CFIDS, Myalgic Encephalomyopathy.

CFS is a fatigue syndrome and does NOT define or describe a neurological illness. ME has been recognized and classified by the WHO as a neurological disease and stands for Myalgic Encephalomyelitis. Myalgic Encephalomyelitis means: My = muscle, algic = pain, encephalo = brain, myel = spinal cord, itis = inflammation. Sound like Chronic fatigue syndrome?

ME/CFS, CFS/ME, Myalgic Encephalopathy are made up terms with different meanings.

ME patients have literally been kicked out of their own disease by this bogus “ME/CFS” nonsense. ALL so called US patient groups
spew this mixed, muddled ME/CFS misinformation.

And to make matters worse, it has come full circle, with these fake (in name only) ME groups that are really about CFS or (whatever anyone wants to call) “ME/CFS.” Read the fine print.

There are literally so called ME studies that may contain no actual ME patients. Rituximab studies case in point. Studies have stated that it is on ME/CFS patients, but will still bill as ME research.

ME patients should NOT support or promote groups or information that continues this ME/CFS shell game or uses these names interchangeably or includes this confusing, mixed/hybrid terminology.

The main point is that ME is NOT CFS, ME/CFS, CFS/ME, CFIDS, Myalgic Encephalomyopathy.

CFS is a fatigue syndrome and does NOT define or describe a neurological illness. ME has been recognized and classified by the WHO as a neurological disease and stands for Myalgic Encephalomyelitis. Myalgic Encephalomyelitis means: My = muscle, algic = pain, encephalo = brain, myel = spinal cord, itis = inflammation. Sound like Chronic fatigue syndrome?

ME/CFS, CFS/ME, Myalgic Encephalopathy are made up terms with different meanings.

ME patients have literally been kicked out of their own disease by this bogus ME/CFS nonsense. ALL so called US patient groups
spew this mixed, muddled ME/CFS misinformation.

To make matters worse, It has come full circle, with these fake (in name only) “ME” groups that are really about CFS or (whatever anyone wants to call) “ME/CFS.” Read the fine print.

There are literally so called ME studies that may contain no actual ME patients. Rituximab studies case in point. These studies have stated that it is on ME/CFS patients, but will still bill as ME research.

ME patients should NOT support or promote groups or information that continues this ME/CFS shell game or uses these names interchangeably or includes this confusing, mixed/hybrid terminology.

Hey John, great blog/interview! I’ve had this for 17 years and strange, curing things have been happening in my brain and other parts of me lately after ABX and some too alternative to even mention here (or in a doctor’s office ;)) but so far I’ve found nobody who will listen.. *hinthint*